Table 4 Univariate analysis for the BCFQOL Scale and coefficients (n = 149)

Parent’s age

143

 Under 30 years

11

Reference

Reference

Reference

Reference

Reference

 30 to 40 years

75

−0.18

−0.13

0.07

0.07

−0.51**

 40 years or over

57

−0.45*

−0.34

0.06

−0.06

−0.71**

Parent’s qualification

137

 11 or 12 years of school

24

Reference

Reference

Reference

Reference

Reference

 TAFE/Technical certificate

28

0.18

0.10

0.05

0.36*

−0.11

 University degree

85

0.13

0.07

0.07

0.28*

−0.11

Parent’s work status

138

 Full-time homemaker

58

Reference

Reference

Reference

Reference

Reference

 Part-time employment

34

−0.21

−0.32**

0.18

−0.19

−0.24

 Full-time employment

46

0.03

−0.06

0.29

−0.03

−0.24

Number of siblings

147

 0

29

Reference

Reference

Reference

Reference

Reference

 1

64

−0.10

0.09

−0.17

0.13

−0.03

 2 or more

54

0.04

0.20

−0.10

0.25

0.11

Child order

147

 The first child

63

Reference

Reference

Reference

Reference

Reference

 Laterborn

84

0.00

0.10

0.06

0.17

0.05

Child’s age

149

 Under 1.5 years

21

Reference

Reference

Reference

Reference

Reference

 1.5 to 7 years

67

0.06

−0.11

−0.32

−0.11

0.09

 7 to 13 years

38

0.00

−0.12

−0.35

−0.11

0.05

 13 years or over

23

−0.21

−0.34

−0.28

−0.36*

−0.09

Child’s gender

149

 Female

128

Reference

Reference

Reference

Reference

Reference

 Male

21

0.13

0.07

0.00

0.01

−0.12

Child’s country of birth

149

 North America

87

Reference

Reference

Reference

Reference

Reference

 The United Kingdom

12

−0.02

−0.09

−0.05

−0.20

−0.25

 Australia and New Zealand

13

−0.29

−0.48**

−0.21

−0.45**

−0.19

 Western Europe

26

−0.51**

−0.52**

−0.43*

−0.46**

−0.61**

 Others

11

−0.01

−0.18

−0.30

−0.32

−0.22

Mutation group

149

 No functional protein

46

Reference

Reference

Reference

Reference

Reference

 Missense/In-frame mutations

36

0.10

0.03

−0.16

0.01

−0.16

 Truncations aa172 to aa781

45

0.05

−0.06

−0.16

0.02

−0.08

 Truncations after aa781

12

0.07

0.06

0.11

0.16

0.06

 Mutations not grouped

10

−0.01

−0.17

−0.06

−0.13

−0.31

Feeding pattern

144

 Oral intake only

107

Reference

Reference

Reference

Reference

Reference

 Combination use

14

−0.13

−0.16

−0.04

−0.34*

−0.10

 Enteral nutrition only

23

0.21

0.15

0.15

−0.02

0.06

Dietary concerns

117

 None

57

Reference

Reference

Reference

Reference

Reference

 Occasional

38

−0.22

−0.34**

−0.40*

−0.40**

−0.32**

 Frequent or constant

22

0.18

−0.20

−0.02

−0.14

−0.20

Floor sitting

123

 No assistance

77

Reference

Reference

Reference

Reference

Reference

 Some assistance

13

0.07

0.07

0.29

−0.04

0.22

 Maximal assistance/unable

33

0.17

0.19

0.15

0.06

0.15

Taking 10 steps forward

20

 No assistance

26

Reference

Reference

Reference

Reference

Reference

 Some assistance

17

0.15

−0.05

−0.03

−0.07

−0.04

 Maximal assistance/unable

77

0.16

0.01

0.06

−0.02

0.01

Eye contact

139

 No

71

Reference

Reference

Reference

Reference

Reference

 Yes

68

−0.10

−0.11

−0.19

−0.09

−0.05

Communication

123

 No/Simple method

42

Reference

Reference

Reference

Reference

Reference

 Complex gestures/vocalisation

57

−0.16

−0.18

−0.38*

−0.16

−0.24

 Sign/Spoken language

24

0.06

0.10

−0.02

0.19

0.18

Seizure frequency

138

 Absent

12

Reference

Reference

Reference

Reference

Reference

 Yearly/Monthly

15

−0.28

−0.15

−0.07

−0.25

0.12

 Weekly

25

−0.29

−0.03

0.14

−0.19

−0.03

 1 to 5 times a day

62

−0.15

−0.00

0.11

−0.09

0.09

 At least 5 times a day

24

−0.11

0.14

0.39

−0.06

0.22

Sleep difficulties

136

 1.00 to 1.50 (1^st quartile)

34

Reference

Reference

Reference

Reference

Reference

 1.50 to 1.81 (2^nd quartile)

37

−0.24

−0.23

−0.42*

−0.33**

−0.37**

 1.81 to 2.17 (3^rd quartile)

32

−0.19

−0.20

−0.34

−0.07

−0.14

 2.17 to 5.00 (4^th quartile)

33

−0.34*

−0.34*

−0.57**

−0.41**

−0.39**

Hospitalisation rate

139

 0 to 0.38 (1^st quartile)

31

Reference

Reference

Reference

Reference

Reference

 0.38 to 0.86 (2^nd quartile)

36

0.19

0.17

0.13

0.15

0.25

 0.86 to 2.14 (3^rd quartile)

35

0.01

−0.09

−0.42

−0.07

0.15

 2.14 to 13.70 (4^th quartile)

37

0.20

0.35**

0.06

0.07

0.16

Respite care

140

 None

37

Reference

Reference

Reference

Reference

Reference

 Formal only

21

−0.27

−0.18

−0.56**

−0.16

−0.15

 Informal only

35

−0.12

−0.19

−0.37

−0.27*

−0.31*

 Both formal and informal

47

−0.50**

−0.35**

−0.24

−0.34**

−0.44**

Financial difficulty

137

 No

76

Reference

Reference

Reference

Reference

Reference

 Yes

61

0.03

−0.09

−0.57**

−0.22*

−0.09